Saturday, March 28, 2009

So Shimmy's got some kind of stomach bug and while it doesn't seem to be dangerous at this point, it's making for some pretty uncomfortable moments for the little man.He's got diaper rash for the first time in his life (a result of some unhappy pooping) and a little more throwing up than we've seen in the last couple of weeks. Add to that an inability to put himself to sleep easily (or at all) and we're pretty thankful that we already had an appointment with our GI specialist scheduled for Tuesday.Jaime is with the little man right now (9:15pm) trying to get him to sleep.Other than that it was a really nice day complete with brunch out with G'Pa Bruce and Grandma Nola, and great windy dog walk and a sweet bath and naked time on the bed with his Mama's. Hopefully Tuesday will bring a simple diagnosis and solution.Think calming cooling thoughts for the little man's tumm and rump.

Friday, March 27, 2009

So, Simon's BNP is up. Not much but it's up. Last month we were at 366 and this month 547. Still significantly below 1000 but still up. HunkyPants not worried, in fact he was surprised that it wasn't up more (to which I replied "what the hell does that mean?!"- not out loud, just in my head).

Otherwise, we're just keeping our eyes on some watery stools and keepin' on, keeping on. Simon was a little stinker last night and since his mommies were out on a date stayed up way past his bedtime with his Mamaw (bedtime= 9:30!!) but isn't that what kids pull with the babysitter or grandparents? Staying up late and doing all sorts of things that they wouldn't normally do with the parents around?

Still, he did sleep till 7:30-ish and most exciting.....not a peep all night!! Not a wake up, not a throw up, not even a spit up.

He's been doing that with his feeding too. We're seeing a real decrease in vomiting so maybe that's why there's the increase in pooping. Gotta come out somewhere right? It's the just watery consistency as of late that's needing some attention. He's just a little off and for the first time in his life has some diaper rash. Add that to the hot weather (we're seeing some sweating- might be heat or heart associated) and some fussiness and Jaime and I are just keeping our eyes peeled a little more than usual. It's exhausting.

I don't want to go back to the hospital. Say that 3x times with your eyes closed and you pretty much have a good idea of how my late afternoon went.

After we had some great visitors earlier this afternoon, Simon was just a little out of sorts, with a little projectile vomit, more than a little fussiness, and exhaustion resulting in 5 minutes naps alternating with 5 minute crying jags.

Tonight he seemed mostly fine but just a little off.

Something's up but we're not sure what. We go from moment to moment.

Yay for the weekend and having two of us.

A huge shout out to Mamaw D for being around this morning and afternoon... Shimmy and I love you big time.

Famblee Photo

Simon and Joan's son Sommers practicing their breakdancing routine...I'm not kidding

Tuesday, March 24, 2009

Jaime didn't have to go into work until 1pm today so for the first time since November she got to come with us to our regular Cardiac appointment. Aside from waiting for an hour for it to begin, Simon did fairly well during his ECHO (we kept him reclined only slightly in Jaime's lap). Howard let us know that not much looked different (same Ejection Fraction and Shortening Fraction 36% and 18%) but then he mentioned almost in passing that Simon's left ventricle seemed to be just a little bit more dilated. It was "marginal" but we would need to keep an eye on it.

Fuck me. Marginal my ass.

Of course, now Jaime and I are trying to not to worry and simply get back to that place of taking each moment for what it is, but what (new) parent can really do that when there's something that might be wrong with your child? What new parent of a child with a heart condition can do that? What new parent of a child with a heart condition that also seems to be changing every five minutes because he's just about to turn 1 and is hitting growth spurts and milestones that we've never seen before can do that?

I could probably go on but Mrs. Rosner my 5th grade teacher didn't like run on sentences.

I'm trying to sit with the 'Simon's hitting milestones and growing' thought rather than the 'Simon's heart might be getting worse' thought.

It doesn't help that our sweet amazing sleeper is changing into a tantrum before bed kinda guy.

Tonight he went psychotic on me for a little over an hour, completely inconsolable and tired as all get out.

I was just about ready to call the hospital when the Tylenol that I gave him 30 minutes before finally kicked in and he fell into a heavy sleep in my arms. Before that happened though I was about to lose my shit.

Any baby (or adult) having a tantrum for an hour is hard to deal with. Nothing to be done to soothe, the arching back, the wails that seem to cut right through you, it's not a good time for anyone. Simon having a tantrum like that feels just that much harder. In my mind all I can see is his enlarged angry red heart working itself much harder than is good for it, growing larger and weaker with every passing minute, wail, arched back spasm.

Really, I was about to lose it. It wasn't even one of those "I want to toss the baby out the window" moments. It was an, "I have to figure out how to stop this or else Simon's heart will damage itself even more than it already is."

No pressure there.

And, what I do know is that Simon's heart is a lot more resilient that I think it is, especially in those moments. Why? Because when I checked his heart rate 15 minutes later it was 120, and when I checked it 15 minutes after that it was 90.

Deep Breath

It's not great but he can have moments like that.

The following morning (it's now Wednesday evening) it became clear what's going on.

Simon is deep in the throes of his 1 year growth spurt. He pooped three times today before 3:30 (he's usually a once a day, if that kind of guy) and has completely changed his nap schedule.

Growth

Spurt

Totally normal for a baby approaching one year.

Thing is, he's not a normal baby. Even if I were just a new mom of a typical healthy 1 year old, this would be off centering enough. I've heard other new moms talk about how hard the changes can be, in that once you finally feel like you have some kind of routine down....they go and change it on you and you don't know what hit you.

With Simon, it's that I catch myself noticing his changes and wondering what the hell is going on? Only my "what the hell is going on?" is also about wondering if he's decompensating in regards to his heart failure.

Heart failure. Simon is still in heart failure. His heart is sick, very sick.

...................

I just wrote this whole paragraph apologizing for bringing that up over and over again but I just erased it. I'm not apologizing for it. You're here reading so....

Yes, I feel somewhat alone in managing that.

{No one is around him as much as I am and even Jaime doesn't get to see the medications going in, the vomit coming out, the doctors visits, and trying to manage his germ contact with other babies and friends, on the same scale that I do. And even when Simon and I do socialize it's not around feeding or medication time- how can it be? That would be so boring and/or messy. So it's lonely. I don't think there's anything to do about it. I don't feel it all the time. I just am now. I feel lonely.- wish I could have the power ballad "All By Myself" playing for you right now)

but I also know that there is so much love and so many people standing with and behind us.

It's hard right now. With the large looming left ventricle question, the growth spurt, and the upcoming 1 year marker, things feel just a little more intense than usual.

I'm hoping that the coming Passover holiday brings an additional kind of celebrating the "exodus". I'd like to think that we're heading out from the tough times.

Monday, March 23, 2009

Continued....Last Wednesday we had a fabulous dinner with one of our midwives, Amrit. It was so wonderful to see her, especially as we come to the one year marker of that incredible night. Jaime and I went over the birth story the night before we met Amrit and then got to rehash it some more over dinner.I think working with a home birth midwife gives you a relationship for life. It starts the same moment that your relationship with your child starts. When does that ever end? In sharing that moment with Jaime and I, I will love Amrit and Lior in a way that I can't imagine ever leaving me.It was such a sweet time to reconnect and catch up.

On Thursday Simon was in rare form and several dog walkers visiting the Point Isabel Dog park that day can confirm that. It's our second day working with a new baby carrier. Simon, chunker that he's become, makes long walks with the ergo not so much fun for the sensitive back of Laura M. Fitch. And while the stroller is wonderful, when there's been any sort of rain, walking on the muddy grass with it, eldoggo, and bebe is not so much fun.

A while ago, my cousin Leah, gave us an external frame pack carrier that's been around the block (it's carried Sophie, Talia, and even Maya on several occasions). Now it's Simon's turn. So far we've practiced with a walk around the neighborhood, and a longer trip to the Zoo. He seems to enjoy it enough so we're experimenting with a longer dog walk today.

Once at Pt Isabel (the largest off-leash dog park west of the Mississippi), Simon goes in the frame pack, Roxie gets to chase her ball, and we're off. It's a beautiful day. The sun is shining. It's neither too warm or cold and there's delightful wind coming off the Bay.

No less than two minutes into our walk I hear a giggle from behind me. Something is making Shimmy laugh. Another three steps....another laugh. This continues long enough that I have to call Jaime on the phone and just let her hear him. He's just laughing for the joy of it.

And then it starts....he begins to babble. A "bah bah bah" here. A grunt and giggle there. His voice rises and falls with intonations I've never heard put together before. There's even a "fwaafwaaa" happening.

Loudly.

Not yelling but full voice. And it just continues.

For a solid hour.

Simon is just talking away, calling out to people that we're passing by, bringing on some very interesting stares and smiles.

For an hour.

Really.

Non-stop.

It was incredible. There was something about the wind and sun, being up higher in the backpack, and being out watching the waves and dogs and people that just set him on fire. It was awesome. I couldn't wipe the smile from my face.

Friday brought another kind of experience with our evaluation at the Regional Center of the East Bay to see if we qualified for services. We'd been told several times that it's a comprehensive evaluation and will last two hours and involve a lot of questions for me and a bunch of testing for Simon. Thankfully Dianne was able to come with us and after a large vomit session right as we were getting ready to leave the house, off we went.Once again, just like his physical therapy evaluation Simon rocked it. And while I was the beaming proud Mommy of the very sick but you wouldn't know it baby, I was also worried that we wouldn't qualify for services that we do in fact need.

Pre Appointment conversation:Leela our case worker- "So the evaluation will likely last up to 2 hours so don't forget to bring some snacks for Simon."

Pause

Me- "umm, he doesn't eat. That's why we're coming to see you. We're hoping for some OT for eating."

Leela- "what do you mean he doesn't eat?"

Me- "he's on an enteral feeding pump and takes all his nutrition through his G tube."Leela- "Right, ok then. You should qualify then."

I think this conversation happened with at least one other person before we actually got to our appointment. So going into it I wasn't that worried about qualifying.

Then we arrived and started to talk with Leela and an OT evaluator. Simon rocked his fine motor skills assessment, turned pages, played peeckaboo, was pinching and grabbing and putting just about everything into his mouth. To every question they asked me "does he...?" "has he...yet?" my answer was pretty much yes. This was making me very nervous.As we finished up I was still waiting for the baby food swallow part of the eval to happen and when it didn't I got even more nervous.

Jaime and I need some help. Simon doesn't eat. He has no interest in feeding himself, never displays signs of hunger, and gags and/or throws up every time we put something into his mouth to swallow. I love food. Jaime loves food. 'food is love' is a saying in our house (no need to psychoanalyze that, there are lots of other types of love too, don't worry).

So as the case manager seems to be wrapping up and collecting her papers I had to ask, "do we qualify?".She says "of course you do. We can hook you up with a nutrition and eating specialist in the next two weeks and get the paperwork going for respite care as well."

Yeeehaw!

But they don't stop there. Both Leela and the OT person go on for minutes about how special Simon is and how they really don't often get to see babies so compartmentalized in terms of their development. As in, except for the not eating part, Simon is doing exceptionally well. There's another blog entry coming about how that's alternately such a wonderful thing and sometimes makes me feel completely alone in the world. But that's for another naptime blog entry.

(BTW Respite care ='s 10 hours a month which is not much but will be a welcome bit of support for me)

And I think, Simon is so amazing! He is so interested in living his life he has managed to drink it all in, save for what is too much for him. Eating and swallowing are too much for him. But, reading and grasping and moving and dancing and pinching (hard!) and hugging are not and he attacks those things with delicious gusto. What a lesson in loving your life and not being complacent. Not being complacent but also being gentle with yourself.

He'll eat. I know he will. It will just take us some time. Luckily that's what his heart is giving us right now. It is taking it's time to heal and get stronger, but the rest of him is doing such a stellar job at just being a baby... that lets us keep going on, slow and steady, going on. So, I try not to worry too much when he won't go down for his 2nd nap because he's too wired trying to roll over and stand up in his crib. That's his job as a baby. I do my best not to freak out when after 25 minutes of said activity he's panting hard. He may be panting hard but 20 seconds later he's not and that's 'normal'. It's just different that I'm counting the seconds to see when he stops panting. And just for fun I'll add in an extra counting his heart rate during the day. Just for fun.

Who talks like that?

Other than that it's been a lovely time of it. We had a wonderful brunch with G'Pa Bruce on Sunday and there's nothing better than watching Simon pull his G'pa's finger.

Today we got recognized at the Berkeley Bowl from our blog. Simon is like his redheaded Mama in that he loves to be recognized. He was just smiling and basking in the attention. Mommy is learning to appreciate it.

Tomorrow is a cardiology appointment complete with Echo Cardiogram, and blood draw. His BNP should be in on Friday and I'm wicked curious.

That's the general update. See you all at the birthday party right?

Here are some pictures of Simon in an outfit that his Great Uncle Barry sent him. Yup, it's Barry's outfit from when he was 2 years old (sometime in the 1840's- oops I mean 1940's sorry Uncle Barry). Check out those buttons. And yes, it came with that silver spoon. You can't see it but it says "Little Boy Blue" on the spoon.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com